The progression of Huntington's Disease (HD) after a person is diagnosed can be divided into five (flexible) stages, as described by Dr Ira Shoulson(1):
- Early Stage - the person is diagnosed as having HD and can function fully both at home and work.
- Early Intermediate Stage - the person remains employable but at a lower capacity. They are still able to manage their daily affairs despite some difficulties.
- Late Intermediate Stage - the person can no longer work and/or manage household responsibilities. They need considerable help or supervision to handle daily financial affairs.
- Other daily activities may be slightly difficult but usually only require minor help.
- Early Advanced Stage - the person is no longer independent in daily activities but is still able to live at home supported by their family or professional carers.
- Advanced Stage - the person with HD requires complete support in daily activities and professional nursing care is usually needed.
People with HD usually die about 15 to 20 years after their symptoms first appear. The cause of death is not the disease itself but complications such as pneumonia, heart failure or infection developing from the body's weakened condition.
1. Ira Shoulson Clinical Care of the Patient and Family with Huntington's Disease Cambridge: Huntington Society of Canada, 1980 p.8
[This page is based on the Association's publication Huntington's Disease. Originally written by Dennis H. Phillips, Ph.D. and first published in 1981, it has been frequently revised and republished since then. The current edition was published in 2001. (Australian Huntington's Disease Association (NSW) Inc.Huntington's Disease West Ryde, 2001.)]